Summary Minutes - May 2, 2013

National Advisory Board on Medical Rehabilitation Research (NABMRR)
National Center for Medical Rehabilitation Research (NCMRR)
Eunice Kennedy Shriver National Institute of Child Health
and Human Development (NICHD)
May 2, 2013

Dr. Pamela Duncan, Board Chair, called the 46th meeting of the NABMRR to order at 8:30 am. 

Future Board meetings will be: December 2-3, 2013
  May 5-6, 2014
  December 1-2, 2014


Members Present:

Pamela Duncan
Michael Dean
Carol Espy-Wilson
Edgar Garcia-Rill

Marilyn Hamilton
George Kraft
Nicholas LaRocca
Richard Shields

Roger O. Smith
Marilyn Price Spivack
Denise Tate
Jonathan Wolpaw

Members Absent:
David Good
Carmen Green
Todd Kuiken
S.B. Lee
Gary Smith
Ex-Officio Members Present:
Tim Brindle, VA
Daofen Chen, NINDS
Alan Guttmacher, NICHD

Lyndon Joseph, NIA
Lynn Paggett, NCI
Lana Shekim, NIDCD

Pimjai Sudsawad, NIDRR
Lois Tully, NINR
Michael Weinrich, NICHD
Ex-Officio Members Absent:
Ted A. Conway, NSF
Suzanne Goldberg, NHLBI

Martin Gould, NCD
James Panagis, NIAMS

Michael Swanson, CDC
NICHD Staff and Visitors:

Beth Ansel, NICHD
Leighton Chan, CC
Theresa Cruz, NICHD
Rosemarie Filart, NCATS
Tinera Fobbs, NICHD
Marc Goldstein, APTA 
Tammara Jenkins, NICHD 

Lisa Kaeser, NICHD
Naomi Kleitman, CHNF
Susan Lin, AOTA
Chandra Liv, NICHD
Michael Marge, NICHD
Ralph Nitkin, NICHD
Grace Peng, NIBIB

Lou Quatrano, NICHD
Mary Rogers, NIBIB
Nancy Shinowara, NICHD
Cathy Spong, NICHD
Peter Thomas, DRRC
Biao Tian, CSR
Nancy White, APTA

Call to Order and Introductions

The agenda for the meeting was highlighted by Dr. Ralph Nitkin followed by introductions from the Advisory Board Members and visitors. Minutes from the previous meeting were reviewed. Board Member Denise Tate made a motion to amend the minutes of the December 2012 meeting to make clear the Board’s overriding support for the recommendations of the NIH Blue Ribbon Panel on Rehabilitation Research, despite having a mixed opinions on the structural recommendations and on whether the scope should extend beyond the NIH. The motion was approved, and the amended minutes were adopted.

Development of a Strategic Plan for the NCMRR

Pam Duncan began the discussion by reviewing the NABMRR Charter (included in Public Law 101-613), which indicates that Board shall advise the NIH on the provisions of the Research Plan. She noted the focus on a “research” plan rather than a “strategic” plan. The current NCMRR Research Plan is 20 years old and tends to provide a philosophical overview of the field of medical rehabilitation research. She suggested that the need for an action plan that focused on goals, objectives, time lines, and strategies. These sentiments were echoed in report from the NIH Blue Ribbon Panel for Rehabilitation Research, which was presented to Dr. Alan Guttmacher in September 2012.

NCMRR Director Dr. Michael Weinrich provided the Board with some background on the original NCMRR Research Plan, which was written in 1993. This Plan was the culmination of several public meetings over the course of approximately 18 months. However, this method for engaging the public would be difficult to execute in the current climate of fiscal constraints. Since the first Research Plan, NCMRR staff has had extensive discussions with the Advisory Board on several occasions and has given periodic official updates to the National Advisory Child Health and Human Development Council every 5 years, although this may not have been completely acknowledged in the Blue Ribbon Panel report. Dr. Weinrich also indicated that the NCMRR had wanted to wait until the larger NICHD Vision planning process was complete before considering any discussion of NCMRR Plans. He indicated that he would particularly like the Board’s help in identifying and engaging the appropriate stakeholders.

The Board agreed that the NCMRR Research Plan should be updated, especially based on the statutory language from the Advisory Board Charter. Given the Blue Ribbon Panel’s emphasis on coordination, the Board encouraged the development of specific actions to increase coordination of rehabilitation research across NIH Institutes and with other relevant federal agencies. The Board emphasized that its role should not be to create the Research Plan per se, but rather to recommend that Dr. Guttmacher and the NCMRR initiate the process to update the Research Plan.

The Board discussed the scope of such planning, stating that it should be scientifically-grounded but not tied to specific research goals, which are difficult to forecast prospectively in a dynamic research environment. The updated Plan should be less philosophical (already covered by the 1993 Research Plan) and more goal-oriented to support and enable the rehabilitation research community. In addition, the Board emphasized the need for the NCMRR to highlight rehabilitation research opportunities through conferences and strategic co-funding opportunities with other NIH Institutes.

The Board recommended building upon the recommendations from the NIH Blue Ribbon Panel report. The Board identified many constituents that should be engaged in the process, including (but not limited to): professional organizations; the Disability Rehabilitation Research Coalition; the Model Systems funded by National Institute on Disability and Rehabilitation Research (NIDRR); the Department of Veterans Affairs and the National Science Foundation; relevant disease/disorder coalitions; the Center for Medicare and Medicaid Services and insurance payers; clinical practice groups; the Society for Neuroscience; the NIH Rehabilitation Research Coordinating Committee; the Interagency Committee for Disability Research; clients, users, and other stakeholders; engineers; the Food and Drug Administration and related industries; mental health professionals; and relevant researchers in the NIH intramural program. The Board also recommended holding feedback sessions at scientific and professional meetings and the use of innovative social media strategies to solicit public opinion.

For action items, the Board recommended that the NCMRR perform a research needs assessment, followed by a comprehensive analysis of rehabilitation research portfolios funded by relevant federal agencies and other research entities. The Board suggested that the NCMRR form a steering committee in the next 3 months to develop the process for creating a Research Plan and for defining the scope of opportunities, needs, and priorities. The Board also asked to receive a progress report at the next Board meeting in December 2013. The Board proposed that the Research Plan should be completed within 2 years and that it should receive periodic updates along the way. NCMRR staff requested that Board members go back to their own organizations to identify planning documents and research summaries that might facilitate the planning process and minimize duplicative work.

Report of the NICHD Director     

Dr. Alan Guttmacher gave the NICHD Director’s Report. In news from the NIH, NIH Director Dr. Francis Collins and President Obama announced the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, an ambitious $110 million program to advance our understanding of neural circuits and brain function. Dr. Richard Nakamura has been named as the Institute Director of the NIH Center for Scientific Review. Dr. Jon R. Lorsch was named as the Director of the National Institute of General Medical Sciences. The NIH was recruiting for two new positions: Associate Director for Data Science and Chief Officer for Scientific Workforce Diversity. To enhance workforce diversity, the NIH was establishing the Building Infrastructure Leading to Diversity (BUILD) program to support mentored research experiences for undergraduate students and was supporting the National Research Mentoring Network to ensure fairness in peer review.

At the NICHD, Dr. Caroline Signore was promoted to Deputy Director of Extramural Research. Under sequestration, the NICHD budget for fiscal year 2013 was $1.245 billion, approximately $75 million (5.68%) less than fiscal year 2012. The President’s fiscal year 2014 budget proposed an increase for the NICHD budget to $1.339 billion.

Dr. Guttmacher met with certain NIH Institute Directors met to discuss the report of the Blue Ribbon Panel for Rehabilitation Research. He expressed support for increased coordination across the NIH, a new Research Plan, and revitalizing the NIH Rehabilitation Research Coordinating Committee with periodic meetings that would include NIH Institute directors. After his report, the Board discussed with him NIH support for undergraduate research and federal coordination of science, technology, engineering, and math (STEM) in general. Members asked whether there was appropriate representation of rehabilitation expertise on NIH peer-review panels. His response explained that the amount of expertise was somewhat driven by the proportion of rehabilitation research applications that are submitted to the NIH, which reinforced the need for continued support of training and career development for rehabilitation researchers.

Coordinating Rehabilitation Research Activities Across the NIH

The Board returned to a motion put forward by Dr. George Kraft at the last Board meeting that the NCMRR be given an annual budget for $125 million, including $25 million for coordination.  As background on this motion, Dr. Kraft explained that a designated budget was needed for respect, planning, and support of specialized research initiatives; he highlighted the Blue Ribbon Panel conclusion that the NCMRR has met it goals but had “failed to thrive”. Some members of the Board pointed out the Blue Ribbon Panel findings that other NIH institutes also support rehabilitation research at levels that reached roughly $300 million per year; they noted that too strong a centralized focus for rehabilitation research in the NCMRR might discourage continued support from these other Institutes. Moreover, some Board members questioned whether it was even within the purview of the Board to make such structural or fiscal recommendations to the NICHD. Dr. Guttmacher indicated that additional funds for increased support to the NCMRR would have to come from cutting other NICHD programs. The Board asked whether - despite current NICHD funding constraints – the NCMRR could be given increased fiscal flexibility in order to support collaborative activities with other NIH Institutes. Dr. Guttmacher responded that this could be a possibility, but that it might force the NCMRR to forego support for other specialized research initiatives that support investigator-initiated proposals. Other Board members suggested that a fixed NCMRR budget would be especially empowering so that the NCMRR could assert leadership in rehabilitation research across the NIH. After some additional discussion, the original motion was modified to provide the NCMRR with an annual budget of $125 million, but included some flexibility in how much would be allotted for coordination. The motion was voted on in two sections: the proposal that the NCMRR should be given a fixed budget of $125 million passed by a vote of 10 yes/2 no, while the motion that at least $120 million of this amount go to research with the rest for coordination passed by a vote of 7 yes/5 no.

Dr. Duncan, Board Chair, led a discussion about coordinating rehabilitation research activities across the NIH. The Board expressed a need for a “rehabilitation guru” who would be knowledgeable about all rehabilitation research activities across the NIH. This person would also act as a statesman to negotiate with other Institutes and Centers to top off grants and to put on annual conferences.

Nominations for the Next Chair-Elect

At the conclusion of this meeting, Dr. Duncan would be retiring as Chair and Dr. Nicholas LaRocca would proceed from Chair-Elect to Chair, so it was time for the Board to designate the next Chair-Elect. Two excellent nominations were put forth and after a paper ballot, Dr. Richard Shields was chosen as the new Chair-Elect.

Acknowledgement of Retiring Board Members and Comments

Retiring Board Members Drs. J. Michael Dean, George Kraft, Denise Tate, and Pamela Duncan were acknowledged and thanked for their service. The names of new Board members were also announced.

Report of the NCMRR Director

Dr. Michael Weinrich gave the report of the NCMRR director. There were no updates regarding research funding and paylines because the NIH budget was still being adjusted in response to the sequestration and the continuing budget resolution. There were no personnel updates for the NCMRR. There had been some reorganization of NICHD programs, which included the establishment of a new program on Pediatric Trauma and Critical Illness Branch outside the NCMRR. Dr. Weinrich indicated that despite the relocation of pediatric critical care outside the Center, the NCMRR remained committed to support of broader aspects of pediatric rehabilitation research.

Dr. Ralph Nitkin informed the Board about new requirements of the Federal Advisory Committee Act that required the NICHD to provide direct public access to all future Board meetings. The Board briefly discussed the potential implications of live broadcasts, but retained the possibility that closed sessions could be held if the topic were not appropriate for public disclosure. 

New Business and Agenda for Future Meetings

Incoming Chair Dr. Nicholas LaRocca solicited potential topics for the next meeting. Responses  included: summary of rehabilitation research portfolios across the NIH (as discussed in the Blue Ribbon Panel Report); update on NCMRR progress to update the Research Plan; discussion of research/strategic plans from other relevant organizations; and possible research presentations by current Board members.

The meeting was adjourned at 4:30pm by Chair Dr. LaRocca.

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